621+1G+T and A455E

[Boser]

Hello, My son is 3 1/2 months old. We were told he had CF at 1 month old. They said he has 2 rare mutations. The docs could not tell me what class they are in. I have been trying to find out on the net but have come up empty. Does anyone have or know of someone with these mutations that can give me any guidence.



Thank you

Heather

 

[Boser]

Hello, My son is 3 1/2 months old. We were told he had CF at 1 month old. They said he has 2 rare mutations. The docs could not tell me what class they are in. I have been trying to find out on the net but have come up empty. Does anyone have or know of someone with these mutations that can give me any guidence.



Thank you

Heather

 

[Boser]

Hello, My son is 3 1/2 months old. We were told he had CF at 1 month old. They said he has 2 rare mutations. The docs could not tell me what class they are in. I have been trying to find out on the net but have come up empty. Does anyone have or know of someone with these mutations that can give me any guidence.



Thank you

Heather

 

[Boser]

Hello, My son is 3 1/2 months old. We were told he had CF at 1 month old. They said he has 2 rare mutations. The docs could not tell me what class they are in. I have been trying to find out on the net but have come up empty. Does anyone have or know of someone with these mutations that can give me any guidence.



Thank you

Heather

 

[Boser]

Hello, My son is 3 1/2 months old. We were told he had CF at 1 month old. They said he has 2 rare mutations. The docs could not tell me what class they are in. I have been trying to find out on the net but have come up empty. Does anyone have or know of someone with these mutations that can give me any guidence.
<br />
<br />
<br />
<br />Thank you
<br />
<br />Heather

 

[welshwitch]

Hi Heather,

I have 621 + 1G + T. I don't know what class it's in but I know it comes from a French Canadian strain.

Here's been my experience with CF so far:

I have a mild case of CF. I've never been hospitalized other than sinus surgery when I was 13 (this is fairly typical for CF patients.) I have a lung function of over 100% but I have to take digestive enzymes with food.

I've been very, very lucky in that my CF has allowed me to live a fairly normal life. When I was little I was a skinny little thing and had trouble keeping on weight. Once I hit puberty I had no problem packing on the pounds!

I'm going to be 30 in November and I consider this a milestone for me, CF or not!

One thing you should know is that mutations do not predict clinical outcome, ie, two people who have the exact same mutations can have very different results. There are also genes called modifier genes that may or may not play a role in making up for the defective genes.

Welcome to the site!

 

[welshwitch]

Hi Heather,

I have 621 + 1G + T. I don't know what class it's in but I know it comes from a French Canadian strain.

Here's been my experience with CF so far:

I have a mild case of CF. I've never been hospitalized other than sinus surgery when I was 13 (this is fairly typical for CF patients.) I have a lung function of over 100% but I have to take digestive enzymes with food.

I've been very, very lucky in that my CF has allowed me to live a fairly normal life. When I was little I was a skinny little thing and had trouble keeping on weight. Once I hit puberty I had no problem packing on the pounds!

I'm going to be 30 in November and I consider this a milestone for me, CF or not!

One thing you should know is that mutations do not predict clinical outcome, ie, two people who have the exact same mutations can have very different results. There are also genes called modifier genes that may or may not play a role in making up for the defective genes.

Welcome to the site!

 

[welshwitch]

Hi Heather,

I have 621 + 1G + T. I don't know what class it's in but I know it comes from a French Canadian strain.

Here's been my experience with CF so far:

I have a mild case of CF. I've never been hospitalized other than sinus surgery when I was 13 (this is fairly typical for CF patients.) I have a lung function of over 100% but I have to take digestive enzymes with food.

I've been very, very lucky in that my CF has allowed me to live a fairly normal life. When I was little I was a skinny little thing and had trouble keeping on weight. Once I hit puberty I had no problem packing on the pounds!

I'm going to be 30 in November and I consider this a milestone for me, CF or not!

One thing you should know is that mutations do not predict clinical outcome, ie, two people who have the exact same mutations can have very different results. There are also genes called modifier genes that may or may not play a role in making up for the defective genes.

Welcome to the site!

 

[welshwitch]

Hi Heather,

I have 621 + 1G + T. I don't know what class it's in but I know it comes from a French Canadian strain.

Here's been my experience with CF so far:

I have a mild case of CF. I've never been hospitalized other than sinus surgery when I was 13 (this is fairly typical for CF patients.) I have a lung function of over 100% but I have to take digestive enzymes with food.

I've been very, very lucky in that my CF has allowed me to live a fairly normal life. When I was little I was a skinny little thing and had trouble keeping on weight. Once I hit puberty I had no problem packing on the pounds!

I'm going to be 30 in November and I consider this a milestone for me, CF or not!

One thing you should know is that mutations do not predict clinical outcome, ie, two people who have the exact same mutations can have very different results. There are also genes called modifier genes that may or may not play a role in making up for the defective genes.

Welcome to the site!

 

[welshwitch]

Hi Heather,
<br />
<br />I have 621 + 1G + T. I don't know what class it's in but I know it comes from a French Canadian strain.
<br />
<br />Here's been my experience with CF so far:
<br />
<br />I have a mild case of CF. I've never been hospitalized other than sinus surgery when I was 13 (this is fairly typical for CF patients.) I have a lung function of over 100% but I have to take digestive enzymes with food.
<br />
<br />I've been very, very lucky in that my CF has allowed me to live a fairly normal life. When I was little I was a skinny little thing and had trouble keeping on weight. Once I hit puberty I had no problem packing on the pounds!
<br />
<br />I'm going to be 30 in November and I consider this a milestone for me, CF or not!
<br />
<br />One thing you should know is that mutations do not predict clinical outcome, ie, two people who have the exact same mutations can have very different results. There are also genes called modifier genes that may or may not play a role in making up for the defective genes.
<br />
<br />Welcome to the site!

 

[Boser]

Thank you for the reply. Happy 30th to you. It is encourging to see that people with the same gene are doing so well. I do understand that each person is different and could have different effects. With being new to this I feel a great need for information.

Your story is inspiring and gives me hope for the future.

Cody has had seizures since he was 5 days old. Bloody stools since he was 2 weeks old. And he is now starting his first cold ( it does not seem to be serious).

 

[Boser]

Thank you for the reply. Happy 30th to you. It is encourging to see that people with the same gene are doing so well. I do understand that each person is different and could have different effects. With being new to this I feel a great need for information.

Your story is inspiring and gives me hope for the future.

Cody has had seizures since he was 5 days old. Bloody stools since he was 2 weeks old. And he is now starting his first cold ( it does not seem to be serious).

 

[Boser]

Thank you for the reply. Happy 30th to you. It is encourging to see that people with the same gene are doing so well. I do understand that each person is different and could have different effects. With being new to this I feel a great need for information.

Your story is inspiring and gives me hope for the future.

Cody has had seizures since he was 5 days old. Bloody stools since he was 2 weeks old. And he is now starting his first cold ( it does not seem to be serious).

 

[Boser]

Thank you for the reply. Happy 30th to you. It is encourging to see that people with the same gene are doing so well. I do understand that each person is different and could have different effects. With being new to this I feel a great need for information.

Your story is inspiring and gives me hope for the future.

Cody has had seizures since he was 5 days old. Bloody stools since he was 2 weeks old. And he is now starting his first cold ( it does not seem to be serious).

 

[Boser]

Thank you for the reply. Happy 30th to you. It is encourging to see that people with the same gene are doing so well. I do understand that each person is different and could have different effects. With being new to this I feel a great need for information.
<br />
<br />Your story is inspiring and gives me hope for the future.
<br />
<br />Cody has had seizures since he was 5 days old. Bloody stools since he was 2 weeks old. And he is now starting his first cold ( it does not seem to be serious).

 

[JazzysMom]

This is from old info I have on my blog regarding mutations.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=2133&flcache=2869923&entercat=y
">http://blogs.cysticfibrosis.co...he=2869923&entercat=y
</a>The 621 1G T is listed in the top ten & as a class I.

I also googled the A455E & found it is a class a class IV.



I didnt give you a link for the 2nd one because I couldnt find one that explained things without including all the other medical stuff.

Hope this helps some!

 

[JazzysMom]

This is from old info I have on my blog regarding mutations.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=2133&flcache=2869923&entercat=y
">http://blogs.cysticfibrosis.co...he=2869923&entercat=y
</a>The 621 1G T is listed in the top ten & as a class I.

I also googled the A455E & found it is a class a class IV.



I didnt give you a link for the 2nd one because I couldnt find one that explained things without including all the other medical stuff.

Hope this helps some!

 

[JazzysMom]

This is from old info I have on my blog regarding mutations.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=2133&flcache=2869923&entercat=y
">http://blogs.cysticfibrosis.co...he=2869923&entercat=y
</a>The 621 1G T is listed in the top ten & as a class I.

I also googled the A455E & found it is a class a class IV.



I didnt give you a link for the 2nd one because I couldnt find one that explained things without including all the other medical stuff.

Hope this helps some!

 

[JazzysMom]

This is from old info I have on my blog regarding mutations.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=2133&flcache=2869923&entercat=y
">http://blogs.cysticfibrosis.co...he=2869923&entercat=y
</a>The 621 1G T is listed in the top ten & as a class I.

I also googled the A455E & found it is a class a class IV.



I didnt give you a link for the 2nd one because I couldnt find one that explained things without including all the other medical stuff.

Hope this helps some!

 

[JazzysMom]

This is from old info I have on my blog regarding mutations.
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=2133&flcache=2869923&entercat=y
">http://blogs.cysticfibrosis.co...he=2869923&entercat=y
</a><br />The 621 1G T is listed in the top ten & as a class I.
<br />
<br />I also googled the A455E & found it is a class a class IV.
<br />
<br />
<br />
<br />I didnt give you a link for the 2nd one because I couldnt find one that explained things without including all the other medical stuff.
<br />
<br />Hope this helps some!